Newish Pots Information

[imapumpkin]

So I had my latest trip to the neurologist this week with my POTS specialist and she mentioned something interesting that she said they had just completed a sleep study about POTS.

By far my worst symptom is fatigue so we were asking the doctor what exactly causes the fatigue if tachycardia and blood pressure are mostly under control. She said that many dysautonomia patients don't get the quality sleep they should be thus waking up feeling as though they've gotten little rest. She said this is because many dysautonomia patients get what she's called "fragmented sleep", meaning even if they reach REM sleep, it is often interrupted for whatever reason, so it's not as restful because the REM sleep keeps getting cut short.

I just thought I would pass along this new (ish) information. She said getting full restful sleep might be helped with a sleep aid like melatonin. It's weird that she thinks I might be someone who has this fragmented sleep because I literally feel like I vividly dream all night long and the only time my dreams are interrupted are when I am awakened.

[Katybug]

My POTS neuro just mentioned this to me on my last visit, too. He said a new study was published showing that there is Alpha wave (awake wave) intrusion on our delta wave (sleep wave) sleep at a much higher frequency than normal people. I had found the abstract of the article and taken it to my new sleep specialist and now I can't find it to link it. I believe it was published in Feb 2013. If I find the article I'll link it to this thread.

[Guest Alex]

Katie, is this the article you're looking for?

http://www.neurology.org/cgi/content/meeting_abstract/80/1_MeetingAbstracts/P03.038

Prevalence of alpha-Delta Sleep in Postural Orthostatic Tachycardia Syndrome

OBJECTIVE: To identify the prevalence of alpha-delta sleep in Postural Orthostatic Tachycardia Syndrome (POTS) patients.

BACKGROUND: POTS is defined as symptomatic orthostatic intolerance associated with a heart rate increase of 30 bpm (or exceeding 120 bpm) occurring within the first 10 minutes of standing or upright tilt, that is not associated with other chronic debilitating conditions such as prolonged bed rest or the use of medications known to diminish vascular or autonomic tone. Patients with POTS complain of symptoms such as non-restorative sleep and daytime sleepiness. Alpha-delta sleep (ADS) is described as alpha wave intrusions in delta NREM (N3) sleep. ADS has been described in patients with fibromyalgia and depression – populations that share similar sleep complaints with POTS patients. We hypothesized that ADS would be observed in patients with POTS.

DESIGN/METHODS: Polysomnograms from patients diagnosed with POTS (n=5, women=100%) were retrospectively analyzed by one sleep medicine specialist for the percent of delta waves with alpha intrusion during NREM sleep. Sleep efficiency and Epworth Sleepiness Scale (ESS) were also measured. None of the patients had a history of fibromyalgia or depression.

RESULTS: All patients had alpha intrusions in N3 sleep. ADS constituted a mean of 7.22% with a range of 3-16% of N3 sleep. Sleep efficiency was decreased in all patients. Those with greater sleep efficiency had a lower percentage of ADS. No correlation was observed between ESS and ADS.

CONCLUSIONS: ADS is an abnormal finding in sleep. To our knowledge this is the first description of presence of ADS in POTS patients. Daytime sleepiness did not correlate with ADS but an inverse correlation was noted between ADS and sleep efficiency. Further investigation is needed to characterize and evaluate the clinical implications given the limited sample size.

Also, but this is an older one (published in 2011)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3077350/

Sleep Disturbances and Diminished Quality of Life in Postural Tachycardia Syndrome

Conclusions:

Patients with POTS have higher subjective daytime sleepiness, fatigue, and worse sleep and health related quality of life. The sleep problems contribute significantly to the diminished quality of life: ∼ 50% of the variability in HRQL (health related quality of life) can be explained by the variability in sleep problems. Further objective studies are needed to delineate the specific nature of the sleep problems in patients with POTS.

Alex

[Katybug]

Yes, that's the article. Thanks, Alex!

[sue1234]

I have been an awful sleeper for a long time, probably 20 years. I live off of roughly 4-7, very fragmented hours of sleep. I do dream alot, too, like you imapumpkin.

[imapumpkin]

It's so weird, I would never say I don't get good sleep. I'm just a light sleeper in terms of sensitivity to noise. Well, I guess the good news just keeps on coming...

[Katybug]

Pumpkin,

From what I understood from my neuro on this, that "light sleeper" thing is ultimately the issue with this. Because the alpha waves keep interrupting our sleep, we don't get all of the hours of restorative healing sleep we should as a percentage of the hours we do sleep. That sleep only happens when you are in deep sleep and the alpha intrusions don't necessarily wake us up, but they can keep us in the light sleep which doesn't really allow our body to heal. Not good for a chronic illness. : -/

[Guest Hanice]

Melatonin doesn't work on me. Until very recently, I had been geeting pure fragmented sleep for two years and a half. My husband took the night shift with our kids since I passed out and went to the ER in an ambulabce. I take valerian instead. It helps calm my nerves a little.

[cupcakemomma5]

My doctors finally said enough already and put my on a light sleeping pill. Which is not the greatest due to becoming dependent on them...so I really had to way my pros and cons carefully.

[Angela]

i would agree with the sleep issue being a factor or possibly a trigger. I started sleepwalking after getting pots and my pots kicked in hardcore not during pregnancy or right after but actually when my son was a baby and not sleeping thru the night plus working full time, I got horrible sleep.

[Guest Alex]

bump

[Anoj]

thanks

[cberau]

I've definitely got that fragmented sleep garbage, even if I get to sleep. I use a withings pulse, and the sleep cycle alarm app on my iphone that uses the accelerometer in the iphone to measure sleep cycles and quality, and the highest percent sleep quality i can reach is 23%. Several doctors have told me they suspected I am never reaching REM sleep, also a psychologist that I got sent to because after hearing my symptoms a doctor thought I was nuts, psychologist didn't though.

[RichGotsPots]

Nice find!

[blueskies]

Interesting article, katybug

I had a sleep study done 6 or so years ago. Along with finding that I had positional sleep apnea (now treated) they also noted that I had alpha waves sleep when I should not be, but they shrugged it off. I struggle to get to sleep at the best of times. But the alpha wave thing really makes sense to me. I still wake feeling exhausted. Plus I have many nights where I feel halfway between sleep snd awake and it's a horrible feeling. Add that to myoclonic jerking and epidodes of sleep paralysis, and increased erythromelalgia pain during the night and nights are often a three ringed circus nightmare.

Not trying to win the worst sleeper award here, I know many potsies find it hard to sleep or have to sleep excessively and still waske up tired - alpha wave intrusion could certainly account account for disturbed sleeping, in my opinion.

blue

[ramakentesh]

I have this problem that waking like I'm dead feeling

[kayjay]

I absolutely had/have sleep problems because of my hyper pots. It wasn't uncommon for me to wake 10-20 times to urinate and often in a pool of sweat.

Now that I am more stable I have learned some bad sleep habits (I mean my brain expects to be woken).

I do have various sleep aids and take them occasionally but I just purchased a book on cognitive behavior therapy for sleep. I think it's called "say good night to insomnia". It's a six week program and I have to say it's really helping me. Last night I took a sleeping pill but I usually am able to sleep ok without them.

It complicated but my physical sleep problems led to other sleep problems.

[Loulou]

yes, I have the same issue with sleep, I am awake sometimes for over 24 hours because I can't fall asleep. Finally when I do, I feel like I never slept at all because I am still so tired. If I end up going several days without enough sleep I get arrhythmia, then I have to take something to make me sleep, and If I take something every night, it stops working all together.